A diagnosis of psoriatic arthritis at age 32 threatened Simon McHugh’s profession and overall lifestyle.
Simon is a luthier (pronounced loo-tee-ay).
He repairs and restores orchestral stringed instruments — violins, violas, cellos and basses. Originally from Stratford-upon-Avon, England, and known throughout the regional string community, he’s operated McHugh Violins in Wichita since 1985.
The workshop inside his business brims with tools of the trade — glue, varnish, various woods, clamps, paint brushes, saws, horse hair, silversmithing materials, hand-crafted bows, more than 100 violins and about a dozen cellos. But all are worthless without functional hands.
A brace on his right wrist and a stiff, inturned left pinky hint at the chronic disease he’s managed for more than 20 years under the care of Teresa Reynolds, MD, with Ascension Medical Group. A rheumatologist, she specializes in arthritis and other diseases of the joints, muscles and bones.
According to the Arthritis Foundation, psoriatic arthritis is a form of inflammatory arthritis in which the immune system mistakenly attacks joint linings, causing pain and swelling. Over time this can lead to permanent damage in joints and surrounding tissues. As with Simon, it occurs in about 10 to 30 percent of people with psoriasis, an inflammatory skin condition characterized by scaly, itchy skin patches.
‘Close the shop’
Back problems attributed to a knee injury from playing indoor soccer had resulted in referral to Dr. Reynolds, but that soon gave way to terribly swollen, red fingers and toes.
“I remember almost crying because of the pain,” he says. “With my living I use my fingers the most, so it was not looking good. I was at a point where I was going to close the shop.”
Simon remembers his wife Susie’s declaration, “We have to move into a ranch.” The stairs in their cherished, three-story College Hill home were punishing on Simon’s knees.
His treatment journey through the early 90s with Dr. Reynolds offered minimal options. Simon, 54, says, “We used the go-to joint medications available at the time — we limped along together.”
Although there’s no cure, autoimmune conditions such as psoriatic arthritis today can be effectively treated with medications to not only reduce pain and swelling but also to fight the disease or put it into remission by reducing bone and joint damage.
The introduction of prescription Enbrel brought impressive changes for Simon in the late 90s. Enbrel is a biologic response modifier, or biologic. It targets the overactive immune system by deactivating a specific inflammation-causing protein.
“It was a miracle drug,” says Simon, noting rapid, dramatic results with reduced swelling within weeks. It brought his symptoms under control and halted the damage to his joints.
“With biologics, a new world of therapy and quality of life became possible for patients with inflammatory arthritis conditions,” says Dr. Reynolds. “Some patients who had been confined to wheelchairs were able to walk again with walkers, canes, or independently. The deformities of rheumatoid arthritis — twisted fingers and toes and rheumatoid nodules — are becoming rare.”
Adjustments in Simon’s treatment have been made over time. Now, non-narcotic pain reliever and a biologic called Cimzia help him maintain his full lifestyle as a business-owner and proud family man with three young grandchildren.
“The medication reduces the searing pain, so in everything I do there’s just a dull stiffness,” he says. “You kind of adapt. I use the fingers that I can to get the job done that I need to.”
Because turns by hand no longer are possible for him, Simon crafted a wood winder that attaches to an electric drill, making quick work of tightening tuning pegs on a string bass. Tools with large handles afford a more capable grasp. At home, climbing those stairs and tasks such as opening jars for Susie encourage continued flexibility. A hot morning shower eases stiff joints, and when he needs to, he rests.
“Being self-employed, I don’t have the luxury or the mindset to call in sick,” says Simon. “I’m very fortunate. I love what I do. I can sit or stand, or kick back if I need to. Having a reason to get up each and every day, whether it’s a job or a hobby, is so important.”
Managing chronic disease is a challenge met best by activity and involvement, he adds.
“The hardest thing is feeling sorry for yourself and going downhill from there. I was angry at first, and I’ve had my share of moments with depression,” he says, crediting supportive family and customers for lifting him up. “I’ve found that the more active you stay and the more preoccupied you are with other things going on, the less you focus on pain, or feeling sad, or your own problems. Stay busy if you can.”